Getty Owl Foundation

The Many Faces of SMA

Guest Blogger Laurie Hoirup:

I have never been asked to do a guest blog before and I am quite honored to be doing so now. I was lucky enough to participate in the Getty Owl Run/Walk as a vendor and I can’t begin to stress enough how very wonderful the experience was for me.

Anyone visiting this website already knows about Getty and her diagnosis with SMA 1, along with how debilitating it can be. I’m sure you are also aware of the incredible support that surrounds her daily, from her amazing parents, family, friends and others who have been touched by their determination and strong spirit.

I’m not so sure you are aware of the spectrum of SMA… I am 57 years old, diagnosed with SMA 2 as a very young toddler and though my disability is certainly significant, it in no way is as severe as that affecting the very youngest children, diagnosed usually by the age of one.

I am for the most part rendered with quadriplegia; no use of my limbs except for my right hand, which operates my power wheelchair on a good day. I am however, blessed to be able to feel everything throughout my body, have complete bowel and bladder control, can sit upright, have some support of my head, I can hug and I can kiss.

I require full personal care for every aspect of independent living; toileting, dressing, showering, grooming, feeding, outdoor mobility, and driving. I am however, blessed with a wonderful husband, family and friends, the ability to complete my education, marry, give birth to my two amazing children, witness the birth of my grandsons, worked at a great job and write my memoir.

My breathing capacity is very limited; 23% of normal, which limits my strength and threatens my life and yet, I am blessed not requiring a full-time ventilator or oxygen, I can speak, I can chew, eat, swallow fairly well and I can share my joy of life with others.

There are also, two more stages of SMA; type 3 and type 4, each having the diagnosis coming much later in life, with considerably less effect on muscle function and ability to live life independently, for that matter, to live. They are truly blessed, especially in comparison to myself, but more so, for the huge differences from SMA 1.

The other faces of SMA are those who are not afflicted with the disability at all, but are affected in other ways, due to their love and compassion for those who are; family, friends, colleagues, doctors, nurses, teachers and the list goes on and on. As I look around me and see all who have supported me throughout my life, and then look at Getty and all those who are at her side, fighting her battle, I realize just how far and wide SMA stems.

These relationships make life worth living for however long, and though I can’t speak for those like Getty, who are probably too young to be so philosophical, I believe that to live and be loved is the real magic here and where there is SMA, there is definitely love.

Getty Owl Foundation has brought together people from all aspects of life. It has brought out the goodness in people, the willingness of others to give of themselves and the belief we can make a difference through love and hope. I was truly honored to be part of this incredible team!

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Laurie Hoirup is an incredible and inspirational SMA Warrior and disabilities advocate.

Please visit Laurie’s Blog here.

Please check out Laurie’s book here: I Can Dance: My Life with a Disability